Tuesday, March 30, 2010

Well as most of you have realized I am terrible at updating my blog. Just terrible. I always say I will get better but I don't think I will anytime soon. lol. I have wanted to post pictures but I lost my camera last month and need to get one really soon. Its driving me nuts. Bryleigh does such cute things and I want to capture them all but now I only have my phone which does not take great pictures.

Bryleigh has been doing good. She is starting to cruise. She is not quite brave enough to let go of what she is holding onto to keep herself to a stand but she is holding it one handed now. We are really in no hurry for her to walk. Her therapist told me that since she has low muscle tone, the longer she crawles the more muscle she will build up in her upper body. So for now I am completely content with where she is at. She is starting to say more words and can identify certain objects by name now. She loves her baby dolls. She hugs them and rolls around on the floor giving them kisses. Its so cute. She also likes to play with her brothers cars. And of course like any child, everything she is not suppose to touch. :-)

She went through a stage where she ate absolutly everything I would give her. And she never seemed to get full. I started to get worried she didn't have taste buds and that her body was not letting her know she is full to stop eating. But she recently stopped doing that.

She has gotten a bit of a mean streak in her at the moment. She likes to lean in to kiss you and then slaps you and laughs so hard. I cant help but laugh too but I need to stop that. lol. She also likes to head-but people which is kind of strange. She always has a bruise in the middle of her forehead. We are working on stopping that too. Also, if I am laying down in bed she will crawl over and grab a handful of my hair and yank on it. But i think it may be an age thing. (Hopefully, lol)

Bryleigh had a seizure on February 27th. We had gone out to eat for my birthday and she was fine when we got there. Then all the sudden she starting vomiting and then went limp, was not responsive, and got really hot. I took off out the door with her to get her to a hospital and she started seizing. It was only on the left side of her body. The hospital we were at called her neuro-surgeon and the neuro said to do a shunt series and if all looked good send us home. Everything looked good so we went home with the diagnosis of a febrile seizure. The next morning she was still not herself and i was still worried as to why she had the seizure so i decided to take her into the hospital we normally go to. They did the same tests over again called the neuro and sent us home. Then Sunday they called us back to the hospital and said that her blood work came back abnormal and they needed to re draw it. So back to the hospital we went. Her blood work came back fine and we were sent home with the same diagnosis. I was not happy with the diagnosis because when she had her seizure her fever was only 100.4 (she was teething). That is not very high. I made an appointment with her neurologist and he said he thought it could at the least been a complex seizure because it was focale (only on one side of her body) but thinks that she may be developing a seizure disorder (hopefully not). I opted to not put her on daily medications right now because we are still not sure what kind of seizure it was. He gave me a medication to give her to stop a seizure if she has another. If she does, I will probably start her on medication. He also ordered an EEG be done. We had that done last Wednesday. Still have not gotten the results. She no longer likes any doctor, as soon as they get near her she screams. Its so sad.

She will be having her encephalocele bone repair on July 6th. I am not looking forward to this AT ALL. But it needs to be done. She still has a big soft spot in the back of her head. With her being as active as she is it makes me nervous. There is no bone there to protect her brain. The area of the brain not covered by bone is the occipital area and that is where the vision takes place. Her left eye is still not as strong as her right eye so we continue to patch her right eye an hour of the day. Her skin is so sensitive it leaves a red circle around her eye for a little while after its removed.

Her developmental doctor and I have noticed that she turns her left foot out alot more than she should. She said Bryleigh may grow out of it but if not we will try using a brace to help her keep it straight. They recommended putting shoes on her more often. This is hard because she takes them off every time. But..I went to the store the other day and found a pair she cant get off :-). So we will see if this helps.

Overall her progress is great and we are so thankful. All the prayers and support Bryleigh and our family received we will forever be greateful for.

I better finish up, Bryleigh is screaming at me now for my attention. She doesn't have a low pitched scream its like a very loud shrilling scream. lol.

I posted two pictures from her birthday party even though it was almost 3 months ago, I just haven't updated in so long :-)

Bryleigh's birthday cakes!

She was not so thrilled about the birthday hat.

Bryleigh's first big snow!

She loves to hang her head backwards. This was before her EEG

After they FINALLY got the electrodes on for the EEG

Pretty head wrap to keep her from pulling them off.

After the EEG. She was not happy with the messy hair she had to leave with :-)

I wish I had some better pictures to post but these are from my phone. I need to get a camera ASAP!

About Me

Bryleigh is a beautiful little princess who was diagnosed with congenital hydrocephalus, an encephalocele, absent septum pellucidum, and thinned corpus callosum. She has had two surgeries and is doing awesome! We are so thankful and proud of her! We welcome everyone to read about her journey!